Data for Health—Coming to a Town Near You

We have some questions for you—questions, that is, about health information. What is it? Can you get it when you need it? What if your community needed important information to make your town or city safe or keep it healthy? How about information about your health care? Can your doctors and nurses get health care information about you or your family members when they need it quickly?

I came across a recent Wall Street Journal article about a remarkable story of health, resilience and survival in the face of an unimaginable health crisis—a Liberian community facing the advancing Ebola infections in their country got health information and used it to protect themselves. When the community first learned of the rapidly advancing Ebola cases coming toward them, the leaders in that Firestone company town in Liberia jumped on the Internet and performed a Google search for “Ebola”. From that Internet search they learned how to protect themselves. Then those brave people acted on that new information—that new knowledge. They did a number of things like use the information to build quarantine and care facilities as well as map the advancing illness cases in their town—so they could be smart about identifying, quarantining and caring for those infected with the virus—and then stop it. Months later, this town is now essentially a lone bright spot of health in a country devastated by death and illness. Why? Because the leaders of that town used technology to get the critical health information they needed, and then they used it to act.

Across the globe, in a far different place we find a prosperous, safe community in the United States. It’s a place fortunate to have vast resources and great wealth. It’s a place with beautiful health care facilities that have expensive, nearly brand new electronic health record systems with some of the world’s best trained health professionals. Almost everyone living in this community has a smartphone and nearly nonchalant, expected instantaneous access to detailed information about everything from traffic patterns and weather to the latest movies and best restaurants. This place faced its own Ebola crisis, and something different happened.

Sometimes data, in spite of all of the advantages, does not turn into useful information. We all know now about the health care system failure in Dallas that prompted the missed Ebola diagnosis there. The doctors and nurses in that Dallas hospital had a brief opportunity to put key bits of information about the patient infected with Ebola together so they could make the right care decision —but they couldn’t quite do it. Instead they missed a chance to get a sick man the care he needed and at the same time triggered a community and national health crisis.

Miscommunication in health care is not unusual. That’s sadly not the headline for the Dallas Ebola story, and it’s not my main point here. It is, however, a striking example of the limits of our current health data system. We have potentially helpful health data all around us—but all too often when we need it to help us make smart health decisions for ourselves or our communities we can’t quite put it together.

What if, however, we developed the information capabilities that would help ensure that you, your community leaders, your physicians and nurses and other health professionals could easily, readily, rapidly and reliably get health information when they needed it in order to keep you safe and help you get and stay healthy? What would that system look like? What do you expect from such a heath information system? What worries you about data systems that provide important information about your health and the health of your community?

We at the Robert Wood Johnson Foundation want to know. We work with leaders like you across the country to help build a Culture of Health. None of us can build that health culture without a way to get and use the best health information possible, quickly and efficiently. So, we’re convening a series of meetings across the country in Philadelphia, Des Moines, Phoenix, San Francisco and Charleston this fall to ask you.

Specifically we’ll be inviting 100 community members from each of those places to tell us their hopes, aspirations, worries and fears about digital collection, access and use of data for health. National Coordinator, Karen DeSalvo is interested in these RWJF meetings as well. She will be at all five events listening in person.

Although creating a reliable data system is a tough technical problem—that’s not really the hard part. The really hard data system challenge will be deciding what we want as a country—what we expect—what worries us—and what we will ultimately demand.

As you can see, we have a lot of questions about health information.

Mostly, though, we’ll be listening as hard as we can to you this fall for some answers.

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